Even the Best Ethics Consults Can Result in Dissatisfaction
Despite the ethicist’s best efforts, people are not always happy with the results of a consultation.
“Sometimes, an individual is upset with a particular outcome because it seems at odds with what they believed were the facts,” says Christine Gorka, PhD, MS, MA, director of the Clinical Ethics Center at Memorial Medical Center in Springfield, IL. Some common examples:
• The patient or family wants to be discharged home, but the clinical team does not think it is safe. Therefore, the clinical team argues the discharge should not happen.
“In those situations, the ethicist can be in the unenviable position of informing the team that we cannot automatically force patients into a nursing home or another ‘safe’ location,” Gorka says.
The ethicist’s job is to work with the team to build a discharge plan that takes both safety and the patient’s values into consideration. A recent ethics consult involved a patient with severe neurological injury necessitating 24-hour care. Her siblings were adamant she should return home. But because she had a PEG tube, the clinical team resisted the discharge plan. “Working with the family, it was agreed that they would attend a couple of training sessions to learn what would be required of them,” Gorka recalls.
This gave the family skills and confidence they would need to care for the patient at home, performed in the safety of a supervised setting. “Or, conversely, if through this exercise they learned that they did not feel comfortable managing all Ms. X’s care needs, the family might come to understand why placement might be best,” Gorka offers.
In this particular case, the family performed each task without difficulty, and voiced appreciation for the training. “This made the team feel more comfortable with the plan to discharge home,” Gorka reports.
• Family members challenge the suitability of the identified proxy decision-maker. This is sometimes because of a known medical or mental health condition, such as dementia, depression, or substance use disorder. In other cases, there is a long-standing interfamily conflict.
“Those individuals are less than satisfied when the proxy is not removed from the decision-making role after ethics involvement,” Gorka notes.
Sometimes, the concern is about the decision-maker being unavailable at bedside, or tough to reach by phone. “The ethicist could identify periods of time to call or alternate contacts/individuals who are used to reach the decision-maker during times when the team is having difficulty,” Gorka suggests.
Family tension often comes to a boiling point when information has to be shared, or visitation times are established. “It is always prudent to have considered individuals responsible for updating ‘warring’ factions, or establish visitation schedules to prevent bedside conflict,” Gorka says.
• The clinical team and the patient or family disagree regarding the benefit of continuing treatment. “It has been said that futility, like beauty, is in the eye of the beholder,” Gorka says.
One possible outcome from an ethics consult is that care should continue for a defined trial period or until a particular milestone is reached — or not. “Anyone who feels strongly that current treatments are futile is not likely to be happy with a recommendation to continue, even if only for a brief time,” Gorka explains.
Sometimes, a little education on how a decision was made, or the role of ethics, helps. “It depends on the reasons behind the opposition,” Gorka adds. If the objection is clinical in nature, such as a dire prognosis, an ethicist may ask the individual to consider the “certainty” of their position. On the other hand, statements like: “I would never do this to my loved one” are an indication that the objection may be rooted in the individual’s personal or religious values. In those cases, “the ethicist may need to remind them that it is the value system of the patient that needs to be considered,” Gorka says.
It may boil down to disagreements among patients, families, and caregivers about what is best.
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